Writing Away the Stigma

Writing Away the Stigma

A couple of years ago, an episode of 60 Minutes featured mothers from a support group for families confronting mental illness. One of them told journalist Scott Pelley about a letter she had received from an attorney representing her neighbors; they were requesting that she keep her mentally ill son in the house. Another mother observed that when her teenaged daughter came home from cancer treatment the family received casseroles and friendly visits and offers of support from neighbors and members of her church—but when that same daughter returned six months later from residential treatment for a mental illness, no one knocked on their door.

Unfortunately, in our society, there is a strong stigma attached to mental illness—in many ways, the worst part of a disease that affects every facet of our society.

In any given year, more than 50 million people in this country have a diagnosable mental illness, and 15 percent of those can be considered seriously mentally ill. By some estimates, nearly half of American adults will struggle with some form of mental illness in their lifetime.

And yet. Not only patients themselves but family members are often viewed with trepidation and distrust; a diagnosis of mental illness can threaten a person’s relationships and even livelihood. As a result, few talk publicly about their experiences, and although successful evidence-based treatment models have been developed and researchers uncover new information about the brain every day, many people still blame themselves for their conditions. This stigma remains a major barrier for individuals and families who might otherwise seek help and treatment. Instead, embarrassed and ashamed, they struggle to recover without external intervention or support, as if their medical conditions were personal weaknesses or flaws.

I believe that one of the most important tools we have for combating stigma—by making it clear that mental health difficulties are not so unusual, and by fostering empathy and understanding and helping people appreciate others’ experiences more fully and compassionately—is telling true stories. Specifically, personal narratives and memoirs can make a tremendous emotional impact on audiences. Even more compelling, recent research also suggests that people learn and retain more information when facts and ideas are presented to them in narrative form. And there are benefits for the storytellers, too; as a recent New York Times “Well” column pointed out:

Studies have shown that writing about oneself and personal experiences can improve mood disorders, help reduce symptoms among cancer patients, improve a person’s health after a heart attack, reduce doctor visits and even boost memory.

Now researchers are studying whether the power of writing—and then rewriting—your personal story can lead to behavioral changes and improve happiness.

Personal narratives can be tremendously powerful and influential; this explains why creative nonfiction is the fastest-growing genre in the publishing world, in the academy, and in fields as wide-ranging as history, law, and medicine. And while no one would suggest that storytelling can cure mental illness, it may have particular applications and uses in the field of mental health.

Lately, I am happy to say, a quiet but significant shift is occurring. People have begun “outing” themselves, resisting the shame and fear of isolation. Just like those courageous mothers on 60 Minutes, people from all walks of life are telling their stories, in hopes that all Americans will begin to understand the struggle and triumph of those millions of people who have battled mental illness. As Patrick Kennedy puts it: “The only way for this to change is for people to share the truth. Total honesty is essential, not only for recovery, but also for changing societal attitudes and enacting public policies.”

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And this is exactly what I hope this book does. Here, we have collected twenty stories from writers experiencing various forms of mental illness—from schizophrenia to post traumatic stress disorder, from bipolar disease to suicide ideation and self-harm. They have all made themselves vulnerable by confronting the stigma and telling their stories in hopes that readers—you—might better understand the challenges they have confronted to live productive and impactful lives.

These storytellers are not alone. We received hundreds of submissions—thoughtful, powerful, honest stories from writers across the country, hoping to be included in this book.

The title of this collection comes from one of the stories we chose for this collection, and in many ways it signifies what all of these writers are doing. Whether visible or not, their scars can be seen as badges of achievement and sacrifice and courage—and maybe even hope. The author of the title story observes, “We understand that private suffering can be transformed, that it can have an impact on the world. We’ve learned the alchemy of pain, and some of us find that anguish does not always turn into violence. It can become something beautiful, too.”

The writers in his collection have made their choice to tell their stories, despite the possible consequences. We must appreciate and embrace their journeys and their struggles to survive.

From SHOW ME ALL YOUR SCARS: True Stories of Living with Mental Illness. To read the rest of the collection, purchase the book.

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NoHomeworkinKthru6

October 26, 2016

It's unfortunate I didn't know the authors were seeking information on personal experiences for this book, as my experience is both unusual and extreme. I was diagnosed with severe PTSD nine years after the triggering event and, for over 14 years, endured one of the worst cases of non-military-related PTSD known to man. But, what made it worse is the failure of practitioners...counselors and psychiatrists whose report was required for a disability claim...to believe my experience was possible.

One college-educated mental health intake worker was even denying people treatment, because she actually believed and was insisting that "it isn't possible to be traumatized by divorce because it's so common in our culture." What's so disturbing about this is that it's not only an idiotic statement, but the person basing critical treatment decisions on such a ridiculous notion didn't realize that, for her statement to be true, it has to also be true that she can't be traumatized by rape and murder because these events are so common in her urban neighborhood.

I hate to be the one to say it, but, if we believe and accept that our K-12 public education system has been inadequate for the last 50 years, we must also accept that the system has resulted in negative and adverse consequences for most, many or too many of those individuals educated by that system. Based on my experience, one such adverse consequence is the graduation of millions of students with underdeveloped cognitive and language skills. This means the workplace contains far too many employees in all fields whose ability to think is as deficient as the above-described mental health worker.

Another important factor re: what I'll call "domestic" PTSD, which the authors may not have discovered, is that, if t's severe enough, it causes Fibromyalgia. This is because trauma triggers "fight-flight (or freeze) syndrome, which releases adrenalin. If this state lasts too long, the brain forgets how to return to normal. It's this change in brain chemistry that causes the neurotransmitters to register pain where there's no injury.

In my case, within weeks of the triggering events, I felt bruised all over. At the time, I had no clue what that was all about and, as it turned out, no one else would have, either, because this was in 1986, years before the illness had a name and definitive symptoms. But, though I experienced an almost immediate onset of FMS's hallmark symptom, it took 14 years of ongoing trauma before I woke one morning in 1999 with such severe all-over pain that I couldn't move.

It's been over 30 years...14 with PTSD and 16.5 with FMS..., and, during that time, I've learned three things. Through anecdotal conversations with at least 50 people who have FMS or know someone who has it, it's become clear that FMS is, in fact, caused by trauma. It doesn't matter whether it's the death of a loved one, major surgery, a car accident or divorce, because the physical affects the emotional and the emotional affects the physical.

Second, the general public still thinks divorce doesn't rise above the level of an "every-day" event from which one should recover within a year or two, even when it involves something as devastating as parental alienation. Third, though the EMDR eye movement treatments seemed to diminish or heal my PTSD enough that I could return to normal functioning, it can be re-triggered at any time, because the mind and body never fully recover from something that severe.